A Small Victory

Today we had a small victory...we won our appeal in court for Mark's SSI/disability benefits. We have been fighting for these benefits for the last two years, since his short term state disability ended after he stopped working. It boggles the mind how the "system" works for or against certain people and why it takes so long for someone who needs/deserves benefits to get them. I know firsthand how difficult it is to go through the maze of paperwork...forms, doctor reports, work status updates, etc. having gone through disability when I had carpal tunnel syndrome several years ago. For Mark, we did everything we were supposed to do. We got doctor reports, filled out forms, went to the Social Security office for an interview. And for some reason, they denied the claim, stating that he was in workable condition....how in the hell do they expect someone who is going through chemotherapy, requiring 30+ restroom visits a day, on multiple pain management medications, etc. to work a "normal" 8 hour day, be able to concentrate on that work AND be able to drive to and from work. Pain meds cause side effects...some of them major, like drowsiness, hallucinations, foggy head. Not to mention the chemo side effects of nausea, vomiting, diarrhea, lightheadedness, body aches, dizziness, neuropathy, fatigue...the list goes on. Yet the person who reviewed his case denied it? Then sent it off for a secondary review and denied it again?? I know people who are on disability...some need to be but some do not. How can someone justify they cannot work because of pain but can go on shopping sprees and stand all night at a night club or concert? What about someone who claims to have mental anguish from being fired but can sit all day at a casino and play Black Jack? But someone who has been fighting cancer for 3 years, is in constant pain, has weight loss because he has no appetite, who has been in ER twice in a month span because of dehydration from night sweats and diarrhea is expected to work? We contacted the Cancer Legal Resource Center of Los Angeles. It is a wonderful organization that provides free advice and guidance for cancer patients to work their way through the confusing system. We were given a referral for an attorney who specializes in disability cases. We were blessed to find an attorney who genuinely feels compassion for their clients and encouraged us to appeal. Our first court date was scheduled back in July...July 3rd to be exact. We were scheduled to appear at 11 am in West Los Angeles, a nice 1 1/2 hour drive in morning traffic. We received a phone call that morning at 8 am to tell us our case was being rescheduled because an official was not going to be in the office that day...in other words, someone decided they wanted an extended 4th of July weekend. So, we rescheduled and here we are today. We were fortunate the "medical expert" they had phone in from Oregon understood Mark's condition and the severity of side effects. Not only the cancer but the heart condition as well. Should be a no brainer, right? It should not have taken us this long...and we still have to wait a month before we see any benefits. The good news is, the battle is over. The great news is they will retro-pay the time lost since we applied. With all the ugliness in the world, I finally got a glimpse of the system working. One that does good for people who need and deserve benefits. I feel like today shined a little glimmer of hope that the "system" works and will continue to work so our futures don't have to seem so hopeless.

A death is a death....or is it?

My grandmother passed away on August 7th. It was an expected event, after spending weeks in a rehabilitation hospital fighting infection...We had a double burial at Rose Hills Memorial Park, she and my grandfather (who passed July 30, 2010 and who's cremains stayed with us at home) were buried together, along side their son (my dad who passed October 6, 1990) and my grandfather's sister (who passed June 13, 2006). It was a bittersweet moment in my life...I've devoted the last 6 years to caring for my grandparents and grandaunt. And the last two years have been a battle with grandma, who had difficulty asking for or admitting she needed help and never showed her appreciation for me. While I'm glad she is no longer suffering, I am also relieved to be able to reclaim my life as my own and do what I need to do for myself and my husband, who is battling cancer.  When I lost my auntie back in June of this year, it hit me like a truck. It was unexpected, out of the blue. I could not stop myself from crying and feeling an emptiness in my heart that I had never felt in my life. I'll admit, I sometimes listen to voice mails she left me months ago...just to hear her sweet voice again. I was blessed to have a big support group of close friends and family...even my virtual family of Facebook friends. I received more flowers and hugs than I could ever ask for. Cards came in the mail just about every day. Phone calls, texts and emails were sent...I felt surrounded by love and comfort. We had over 400 people attend a beautiful ceremony with video tributes, flowers galore and a white dove release at the end.  But with my grandmother, it was a different story. She was 98...most of her family is already gone, sad to say. She had told us she wanted simplicity when it came to her service, so we requested no flowers. It was short and simple, just as requested. But I wasn't prepared for the difference in how the death itself was treated. Very few cards came. Relatives sent beautiful planters to the house and a dear friend brought a lovely plant in person. Another friend sent a monetary offering...keeping an endearing Japanese tradition alive, which I adore her for doing so. A loving cousin text and emailed several times the days leading to and after the service...she is still doing so, which is why I love her too! But the circle of love and support I've come to depend on in my time of need didn't seem to develop on as grand a scale this time around. And no, I'm not fishing for sympathy. I'm not angry that we didn't have a large turn out for the service. I'm simply trying to understand and educate people, my readers, on the topic of death. In working in the funeral business in the past, I've now been on both sides of the coin. And I've learned more as a mourner than I did as a funeral director. Every death is significant. It doesn't matter if it is stillborn child, a convicted murderer or a victim of an accident. Each person who dies leaves someone behind. Someone misses that person, the daily interaction...even the bad times they had with them. The tradition of sending stamps with a thank you card to people who have sent monetary or floral gifts is a Japanese American custom. It is a token gift as a sign of appreciation from the family and a way of saying, "Please continue to stay in touch by use of these stamps." It's beautiful and touching, a way to reach out to others not to forget those who are left behind after a death. A friend in the medical field once told me that cancer survivors usually go through a depression after they complete therapy. They become used to seeing doctors, nurses and others as a weekly routine. Suddenly, once they are cured, they've lost that circle of support. They are no longer asked on a regular basis, "How are you? What can I do for you?" That amount of personal attention is suddenly gone. It's the same way when someone passes away. Funerals are about the survivors, not the deceased. Once the casket is in the ground, the flowers have wilted and the thank you cards have been sent, it's not over. I guess what I'm saying is, please continue to show support and love to a family. Be there for them, in whatever capacity you can and that they need. Because a death of any sort is still a death.